avais1

Thanks for the suggestion Blackwolf. I am going to try that tonight. Now that you mention it, I DO notice that I have a hard time laying flat. I'll give it a whirl .

Wow, that is just so bizarre. Why would he advise us differently? Have you called him to ask? I feel so bad for you , this must be so frustrating......

Prayers to you!

Hi all! I was out of town this past weekend up on the North Shore of Minnesota (lake Superior) for an early getaway with my fiance for Valentines Day. And of course, after the five hour car ride, and not much sleep, I totally POTSed out the next morning. I had it all, in its glory, plus I was alone as my fiance had gone Snow-shoeing. So I was literally stranded, alone, and having a doozy of a POTS attack. Then, I thought of all of you . Suddenly, I didn't feel so alone. I knew that all of you knew exactly what I was going through, and in a way, you were all there with me (what fun for all of you ). Anyway, thanks for helping me through the tough times, even when you aren't physically writing me on the computer. Someday, we are going to find our way, and beat this thing. Bless you all!

Congrats on beautiful baby Gabby!

What a great topic. I loved reading all of your posts. I learn so much here. I'll share my two cents on the SSRI and the SNRI. I had the catecholamine test at Mayo, MN. You will think me strange, but this was my favorite test . All I had to do was lay down and doze off, and since they put a port in my vein, they didn't even have to bother me with the blood draw. I could feel it in my gut though, every time they drew, I got a little nauseated ( I was hypovolemic at the time - but at the time I didn't know it, or even know what that was ). Anyway, laying down, my cetachols were normal, in the 200's. Then I stood up, and they shot to almost 800. And yes, my little heart was a racin' ). Afterward, I met with Dr. Low. No SNRI's for me, my norepinepherine was too high as it was (SNRI's work on the norepinepherine transporters). I take Lexapro, 5 mgs, which is an SSRI, meaning it hits the seratogenic receptors only. It was **** to get me on it. I thought I was going to die. Before that, I had tried Paxil and Celexa, only to quit 48 hours later because I felt like my stomache was being ripped in half! So in my experience, not all SSRI's are created equal. My doc made me tough it out, as it was this or nothing else. I made it - thank goodness. I have been on for 2 years now, and it has helped me immensely. I asked Dr. Low why this is, and he told me that neurologists do not really know exactly why it works, as off brand use of SSRI's has really not been studied. Hey, when you are desperate......

So sorry to hear of your terrible lack of info. I guess I am just perplexed as to why Dr. Low tilted you while still on your meds? When he tilted me, all I was on was Lexapro at the time, and he made me stop taking it for 48 hours before the tilt and the sweat test, chetacholamines, etc. Are you sure he was completely aware that you had taken them? Did you tell him yourself?

I live in Minnesota (the Iceland of North America excluding Alaska ). I can tell you that if I go from one temp extreme to another too quickly, like leaving my nice warm apartment, and then walking outside to sit in my car that is 14 degrees on a good day, I can POTS out. The ANS controls the area that controls body temp, so too cold or too hot, we have issues. Spring and Fall are my favorite seasons for this reason! Anyway, stay warm, and hang in there. It is February, and the sun is coming around!

Thanks to all of you. You are all so kind for listening to me complain ! Bless you all.

Hello! Also, bring the actual test records with you. For example, I certainly did not want to repeat my brain MRI, my upper GI, nor my gastric series, so I brought the actual films with me. Mayo will reread them, but should not make you take the tests again. I used to work for Blue Cross, and we yelled at Mayo for running too many repeat tests. They are getting better, but the patient must be diligent in bringing their own records. Good luck!

I used to faint when I was little, and I was told it was hypoglycemia. I too have had the fasting 4 hour GTT test. I passed the test, but was sicker than a dog during the test. I think Opus had a point - for me, it is the SPEED of the change. And since the ANS does control this function, and none of ours works properly (or we wouldn't be here) it is feasible that we may struggle with blood sugar issues. I basically follow a diabetic diet, and it does help. There is definitely no harm in it. Good luck to you!

Hey Emily, I hope you are better soon. My thoughts, energy, and prayers are going out to you right now. Hang in there girlie!

Here I go again! Sorry I haven't posted in awhile, but have been battling a bit lately. I need to vent just a little . I told you all about my POTS attacks while laying flat and hitting me in the middle of the night on a different post. Now, let me "up the ante" . Now, not only do I still have these spells, I HAVE TO HOLD COMPLETELY STILL! Bizarre, I know. I woke up, and all I did was roll over, and my heart took off. my palms got sweaty, and I thought I was going to throw up (oh, the fun never ends ). The only thing that kept my heart at bay, and the nausea, was to hold completely still. As long as I didn't move, nothing happened. Then, my poor fiance, rolled over, and just the movement from him in the bed started the next wave. Do any of you get this, or am I just "weird"? This is going to be a real bummer if I have to sit motionless when this hits, how on earth am I going to fly in a plane next month? Anyway, thanks for lending an ear. Or should I say, an eye!

Hey JLB, Just checking on you. How are you doing today, any better? I, too, had the dental work put off for a year and a half, and had a tooth that I needed drilled desperately. I finally had to bite the bullet and get it done. I told my dentist my fears, and about my nervous system problems. Here is what we did: an hour before the appt., I took 2 advil (advil is my wonder drug) and I took a klonopin (anti anxiety med). I brought my CD player with soothing music, and my dentist assured me he would use as little novocaine as possible, and he used more of the numbing stuff on my gums. He talked to me the whole way through, explaining the steps, and how much time I had left. He also reclined my chair so I was laying down flat. Fighting off the anxiety was the worst part for me, but before I knew it, he was done. It wasn't too bad. I, too, have a tricky heart. It will fly (I usually hit 170 everytime) at the drop of a dime. The key for me is to focus on something, and try and stay as relaxed as possible. Hang in there!

Keep the faith brwneyedchica! Your story could have been written word for word by me. I think if you can see that doc at the Cleveland, it will do wonders. I too, had to take a year off from school last year, it was just too hard for me. But I am back in now, and doing okay. There is hope. Hang in there.

Don't forget the BRAT diet, bananas, rice, apple juice, and toast. It helps "firm things up". I had a horrible POTS episode 2 years ago, and lost 37 pounds in 1 month, because my GI system just started roiling with no end. Everything went through me. Also, I lived on Pedialyte for electrolytes, and Ensure with extra protein to get my vitamins, as pills were out of the question. Good luck to you!

I, too, have a horrible time at night. For me, it's "all the monsters (anxiety, thoughts, POTS, you name it) all come out of the closet at night. But I learned a trick from one of my girlfriends who recently battled breast cancer. At night, when she gets a "mindstorm", she tells herself this: "I have a choice". I can choose to lie here and go on with this mindstorm, which probably will not get me anywhere, OR I can practice some relaxation techniques, read, etc. I can tell you that just about every night, I have said "I have a choice." And I do, and I choose not to let these mindstorms get the best of me. When the POTS hits, it hits. I just lie still, and try not to panic too much about it. Just know that you may be physically isolated, but you are by no means alone. Take Care!

Hi Nina, Sorry to hear about your soreness! I liked your Target trick, though . Take it easy on yourself.

Hi Merrill, On my 24 holter, I went 68 while asleep, to about 105 during my regular day, with spikes at random (meaning occurring sleeping or awake) of up to 178. This was at the height of my POTS diagnosis. Don't know if that helps you or not. Also, I am one of those "weird" ones regarding Beta Blockers. Dr. Low had me try one Inderal (Propranol) 10 mg. I had the WORST reaction. I felt faint, sick to my stomache, me heart actually raced even more. I never took another one. After that, Dr. Low decided Beta Blockers were not for me. He said my body needed the higher heart rate to compensate for something else that has been damaged in the mechanism. Also, you might want to do some more research. Recently, it was either on the JAMA or the New England Journal, or else the Lancet, I saw an article that Beta Blockers can actually CAUSE arrythmias in some people. I am lucky in that I have a cardiologist who has the "less is more approach". I agree with that as well. Anyway, good luck!

Ernie, Have you ever thought about coming back down to Minnesota? If you need instant access back into Mayo, crash through their ER. My friend is a nurse in the Mayo ER, and that is her advice. I know it works, because I did it, and that's how I got to Dr. Low. In Minnesota, a facility cannot deny a patient care (example: no money). They have to treat you (unless you are threatening to the staff and dangerous - sometimes I wish I was strong enough to be ). Anyway, I hate to have you wait for another year like this. Don't feel bad about your appointment. Your spirit is willing, but the flesh is weak. And that is NOT your fault. Good luck to you.

Hey Tearose, you win the prize! My fiance had the same symptoms the next night, so I guess it may really have been a virus. I never know if I am really sick, or if my autonomic system has just gone on the fritz !. At any rate, thank you all for your responses, and tips on keeping warm. I'm off to the hot water right now! Take care to all.

Thank you for all of your responses. What a varied bunch we all are! I only take 5 mg of Lexapro, but it was **** to get me on it. For me, it was the only option, as my dysautonomia hits me particularly hard in the GI area, and it was the only SSRI that did not rip my intestines apart. My doc, too, made me "weather the storm" with it, and I must admit, I did get a lot better with my GI issues after I got the drug into after a few weeks. It also seemed to slow my heart down, almost back to normal. Thanks again.

I have a question for those of you who take SSRI's. In April, it will be two years that I have been taking Lexapro. I tried to wean off of it once or twice, but the worst POTS symptoms always return. I am forced to take it if I want to feel decent. My question is, do any of you know if there is a "time limit" on how long we can take SSRI's? Is it okay to stay on it for years at a time? I read all of the prescribing information on the websites, but they do not address this question, and (get this) my PCC doesn't know the answer! Have any of you been taking SSRI's for a few years? Thanks for your help!

Hi all, I hope all is well with you. I was wondering if you all would take a crack at a couple of questions I have. 1) Last night, I had a brief (thank goodness) POTS attack. But the strange part was this: Before I had the attack, I'd say for a good hour before, I was FREEZING. I was in my pajamas, under a heavy quilt, sheets, and another blanket, and plastered against my fiance for warmth. Even with that, my hands, arms and feet were like ice - literally. My fiance couldn't believe it. No matter what I did, I COULD NOT get warm. Question: Does this happen to very many of you? 2) Before the attack, my joints and muscles were aching. Excruciatingly. My finger joints, my wrists, my elbows, groin, knees, ankles, feet, you name it. If it had a hinge, it throbbed with pain. Questions: Does this happen to any of you? Believe it or not, the POTS attack was what ended all of that stuff (although it brought me the nice panic/nausea and profuse sweating that comes with it - you know, our favorite ). The coup de gras: of course, I was lying down and trying to go to sleep, so I kissed that off for the rest of the night (sorry, a small vent creeped in ). What do you all think?

Thanks Mighty Mouse, this article was helpful. I really struggle with the motility issues.